Now I have to find my new normal in life

I could have Vulva cancer!

That’s all that was in my head as I walked out the surgery to my husband who was waiting in the car with my son. I was trying really hard not to cry. I needed to get home.

I remember feeling sick and holding back the tears so my son didn’t ask what was wrong, he is only 11 and has autism so wouldn’t understand. Hell, I didn’t understand! I had never heard of vulval cancer, I didn’t even know the outside vaginal area was called your vulva.

I got home and then told my husband what the doctor said, he looked shocked.

I had to wait for a call for an appointment to see a gynaecologist and have a biopsy. I was told it should be within 2 weeks.

That night I went to bed but couldn’t sleep. I started to cry so I went downstairs so no one could hear me especially as my son and daughter didn’t know. I wanted to wait until I knew everything before I told family. I cried so hard I collapsed to the floor in my kitchen and stayed there for a while. I just wanted my mum, but she wasn’t there.

I was sure it was cancer and as I'd had the symptoms and ulcer nearly a year so thought that it must have spread! I told myself I had weeks maybe months to live.

I came to terms with death quite easily, until I thought about my family, I wouldn’t see my son and daughter grow up, get married or have kids. Help them in life. I then thought back to how I felt when I found out my mum had cancer and what it was like when she died. I realised how scared she must have been and how I felt when I was told.

I didn’t want my kids to go through that.

The next few weeks were a blur! I decided to sort all my stuff out so my daughter and husband didn’t have to. I packed up most of my stuff in my bedroom and sorted through all my clothes. My poor husband made about 4 trips to the tip.

I took my daughter shopping and brought her lots of things, I nearly brought a couple things for myself then thought, "What’s the point? I won’t be here to use them."

I had my biopsy which was a day before my birthday. Only my husband knew. It was hard to act normal around others. I thought that would be my last birthday.

I arranged my funeral in my head, found flowers and a coffin I liked and saved them on my phone. I would go for a bath most nights and just sit and cry as that was the place I didn’t hold it all in.

I got my biopsy results of Lichen Sclerosus (again I had never heard that condition before either) and squamous cell carcinoma (vulva cancer).

I then had to have PET scans and MRI and wait for the results to see if it had spread. I had convinced myself it had, and was having symptoms of bladder and bowel cancer.

The next couple weeks seemed to go so slow but finally got the results that it hadn’t spread and surgery was in 2 weeks time to remove the tumour and sentinel nodes biopsy to test if it had gone to my lymph nodes as scans were unclear in seeing cancer in nodes.

What a relief! It hadn’t spread and was stage 1b. Then the symptoms I was having all went! Surprising what you can imagine and how it tricks your body.

I had a plan of treatment and was feeling positive and so much better. I then told my 16-year-old daughter which was the hardest thing I’ve had to do! She had already lost her nan to cancer. I decided not to tell my son as he wouldn’t understand and as having autism has no empathy.

I then started to tell the rest of my family and friends.

I wasn’t scared or worried about the operation - I just wanted it over. Surgery went ok but from my scan to operation the tumour grew aggressively so was too close to my bum to get clear margins so had to have radiotherapy to make sure. The lymph node biopsy came back clear.

I stayed in hospital for 5 days and once home I had to lay in bed mostly for 4 weeks as sitting was too painful especially as all my stitches came out so took longer to heal. But it was ok.

Once I had healed enough I started 5 weeks of radiotherapy (August 2016) which wasn’t easy. I was tired all the time and had bowel problems and my skin on the inside of my groins started to go red and hot then the skin started to come off and weep. I found walking painful and the journey up to London on the train during the hot weather extremely hard. But I did it!

After a few weeks, I went back to work and tried to get back to normal but my scan showed a node was still swollen from a previous scan so they decided in December 2016 to remove more nodes to check. They removed 6 lymph nodes from my left groin and 3 came back cancerous. I was devastated again! It had already been 9 months and I was going to have to have more radiation on both left and right nodes plus my abdomen to make sure.

I spent New Year’s Eve weekend in hospital because I got cellulitis while on holiday and had 2 more operations on my groin so spent most of January 2017 in hospital because I had many problems getting the infection under control and had to have the groin drain put back in. I then started my second lot of radiotherapy in March 2017.

33 sessions over 8 weeks. I knew what to expect this time and as it was higher up my body so walking this time was much easier. Still, I was having bowel problems and so tired all the time. By the time I had my next scan it had been 16 months of scans and treatment and finally in July 2017 I was given the all clear! In remission, cancer free.

It had spread to my lymph nodes so I beat stage 3 vulval cancer! Yes I was happy and relieved but I had been on autopilot the last 16 months so now it was over? I can get back to normal? No, now I have to deal with the side effects of the surgery, and the radiation. It put me straight into the menopause, I then had lymphedema confirmed in my legs, pelvis and abdomen. I have nerve damage and pain in my left groin, still have bowel problems and I am tired all the time - but yes, I beat cancer! For now!

I still have Lichen Sclerosus which is the skin condition that caused my cancer and was left untreated for many years. It seems I’ve had it since I was a child but it was missed and misdiagnosed as cystitis and thrush multiple times over the years. I had swabs and blood tests but Lichen Sclerosus was never mentioned.

If a doctor or nurse had recognised the symptoms I would have been diagnosed much earlier and been using the steroid, so I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3 cancer. I would not have had to have radiation which caused all my life changing side effects. If I had known about LS and Vulval cancer I would have gone back to the doctors and not given up going.

If I hadn’t seen all the adverts for thrush and Vagisil for vaginal itching, I wouldn't have been thinking this must be normal. If the nurses who did my smear tests had been trained in LS and vulval cancer. If midwives had also been trained in LS and vulval cancer then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife.

It’s now been a year since I was given the all clear but life hasn’t gone back to normal. It never will.

Now I have to find my new normal and accept that every new sore or red area or pain could mean that cancer could be back! I worry that other symptoms are a different cancer.

Worry every scan that they will find something. Feels like a ticking time bomb. Worry that my family will get cancer too. The depression and bad days.

I still go for a bath and have a good cry.

The guilt you have for surviving and others don’t.

The anger of so little awareness of both conditions.

Why the medical profession don’t know or misdiagnose.

Just because it is common in older women, they dismiss it if you're younger.

So now I’m trying to raise awareness as much as I can especially as vulval cancer doesn’t have any charities of its own or an awareness day/week of its own or official ribbon or any celebrities to help or have tea parties.

More awareness and research is needed in LS, VIN ,vulval and vaginal cancer.

I don’t want anyone to go through what I have and am still going through.

Nurses and GPs need training in all these conditions, especially those who do smear tests.

Vulva cancer needs its own awareness week to make any impact. More research is needed. 

I like to help whoever I can, whether it's with tips, support or just someone to talk to who is going through the same as you. 

We need to use the word vulva more!